As a support group leader, do you feel supported? Are you a patient who has been denied a voice because you are not a doctor? There is an old Indian saying, “Don’t judge what I have to say until you have walked in my shoes.”
If the voice of patients are drowned out or denied, we will lose the struggle. We need to empower support group leaders and recognize them for what they are doing. Some patients have skills confirmed by professional degrees, but all patients have knowledge derived from first hand experience. We must empower them to write more about their struggles and stop the nonsense employed by those who would silence them.
Bob Williamson served as the Leader of the Tidewater Neuropathy Support Group in Virginia for over thirteen years. Thirteen years that is, month after month leading and educating. Thirteen years would be 156 meetings to organize and lead. Just recently he had to resign from his wonderful work and unfortunately no one stepped forward to continue the work. Bob never stopped working for neuropathy patients, as he unselfishly gave himself to the cause. Bob will remain an example to us all of what dedicated selfless service looks like in our battle, not only against our own neuropathy, but against the forces that would discourage or discount or even try to stop our work as patients. Now Bob told few, but he held a PhD in Physics. No one held a party to recognize his work! Why?
It is the dream of the NSN to provide AWARDS and RECOGNITION for Support Group Leaders who are recommended by you for the work that they do or on their decision to ‘retire’. Do you know of someone who deserves such recognition or that we should mention in an E Newsletter? Send us the information and story. Write to: gene@neuropathysupportnetwork.org
Power does strange things to leaders!
Too many of our leaders in neuropathy organizations diminish or deny the writings of patients who are not doctors, yet hold professional degrees. Have they not noticed how many of the writers in publications such as Neurology NOW or IG Living are professionals with degrees and sometimes patients? What a great empowering idea!
No one denies that this battle will be won with the support and training of great physicians upon whom we depend for our diagnosis and treatment. No one with good sense will deny that only physicians can diagnose and treat illness by law. Conversely, patients who are educators, counselors, social workers, teachers or other fields, who live in the real world of the neuropathy patient, can write with greater power and conviction, let alone with the practical ideas that spring from experience.
The neuropathy struggle will be lost, if leaders do not empower patients to speak out, patients who suffer the consequences of lack of awareness, physician training, diagnostic tools, sufficient research, treatment options or snake oil treatments with false claims.
No one brings the passion and dedication to our mission, like patients who are PN’ers. I know there are many of you who have worked and are working so hard to ‘get it done’. You face disappointments and yet you keep on doing. That is the story of many of us, who are too often surprised by those who attempt to stop, discourage, prevent, discount, ignore, the work we do as patients. Some on that list would surprise many of you. That is why I have posted the “prayer for support group leaders ” on then NSN website.
Jessica Benjamin works tirelessly as the Administrator of a FACEBOOK support group, actively looking for ways to help others. With a great determination she administers the Facebook site and explores ideas for increasing financial support for the work of neuropathy awareness, hoping that someone will care as she does about what is OUR fight. She understands the meaning of “it is more blessed to given than receive”. Jessica is a touch of light at the beginning and end of a tunnel of hope. To visit the Support for Neuropathy Facebook group, click here:
Bev Anderson is the President of the Western Neuropathy Association who lives in California and works tirelessly to encourage and empower support group leaders in more than 58 groups on the west coast. She has become a dear friend and promotes the work of the Neuropathy Support Network. She embraces the work of the NSN for veterans who following exposure to Agent Orange and suffer from chronic neuropathy without help or support. Her outreach to provide information from all resources to help neuropathy patients, is an example of real unselfish leadership valuing partnerships and collaborative efforts in helping patients. She never stops looking for opportunities to reach out and touch those who are looking for support and information. She has written many articles and has one of the most informative E newsletters currently published. You can contact her at: faith95@colfaxnet.com
Bev recently sent this e-mail on an event in California that shows how serendipitous opportunities present themselves to us and the impact that she made at that meeting.
Greetings, Gene,
Today, I went to an area-wide GBS-CIDP meeting. People from a wide area came, about 20 or fewer people. Some were sizable groups of one family. I gave each individual or family there one of your DVDs. They were delighted to get it. Only a couple there had CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) most had GBS (Guillain Barré Syndrome) and were fairly much recovered. No one claimed 100% but most claimed 90% recovery or better. Some had it longer ago than others. I met some very nice people.
I received a warm welcome and was given a few minutes to introduce myself. About 30 minutes after we started and just as the woman from The Blood Source, who spoke, finished, two African-American women came in. They had come to ask for guidance for their son who had major problems when he was young but seemed to grow out of it. Now at 23, it was recurring. It was rather different from what anyone had ever heard and people took interest. They got some suggestions and asked questions. Then, the other people who came told their stories.
I heard some heart-rending stories from GBS people of their hospitalization, being on a ventilator, etc. for weeks. It came on so quickly with some. A woman didn’t feel too well in the morning but made it to work. In the first hour, she called her husband to come get her and take her to the ER because she had lost the ability to walk. By that evening, she was on a ventilator paralyzed from the neck down. It is good that they, for the most part, get over it. People with CIDP have it chronically so it never goes completely away. .
The blood Source lady dealt with IVIG and how they process collected blood. She had an excellent presentation. They had some very nice refreshments. People stayed and talked.
The Empowerment of Neuropathy Patients:
Voices in the Neuropathy battle continue to bring attention to the valued statements of physicians and this is important. However, many of these same neuropathy organizational leaders deny, discount, or challenge the right of patients to give voice, claiming they have no standing in this battle.
One leader removed a patients’ name from a great article reviewed and endorsed by medical professionals, because the patient was not a doctor. Another subordinate leader ‘buries’ patient articles, when given the right of first refusal, even when the patient wrote from the ground of a qualified professional with three master level degrees and four decades of experience as a counselor, teacher, and public speaker. Another leader attempted to suppress and discount a ground braking DVD produced by patients who were professionals and has by default diminished this ground breaking accomplishment, after encouraging its production! Another leader called a patient who had been freely invited to speak at a support group meeting and actually attacked them as not qualified to speak while ignoring their qualifications!
These behaviors are of course about power, jealousy and control, not leadership. May we empower leadership that has the vision to embraces the entire community of voices in our neuropathy struggle whether a doctor, a patient, another organization involved in helping patients, or others who have a commitment to the struggle for neuropathy awareness and progress toward a cure.
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.
Copyright 2012 – 2015 Network for Neuropathy Support, Inc., dba Neuropathy Support Network. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at gene@neuropathysupportnetwork.org.
